Sometimes, you alter life. Sometimes, life alters you.

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08/10/2011

Remember your first love? The one that got away? The one you kissed at the bus stop? Made out with in the basement? I LOVE love--finding it, missing it, embracing it. IT truly makes life worth while.

I met my first love on a Junior High Ski trip. I hadn't skied before, but that didn't stop me from plowing a Black Diamond. Within seconds, I knew I was in trouble. I lost control...crashing into the boy who would preoccupy most of my adolescent future.

There were lots of "firsts" with Craig: first kiss, first dance, first midnight movie, first concert (REO Speedwagon and Survivor). We were so innocent. In my mind, he will always be A-MAZ-ING!!

Even today, when I hear Sister Christian or Can't Fight This Feeling, I think of him. I still remember sitting on my blue flowered bed, clutching his white teddy bear, crying. We ended for stupid reasons. It was my choice. I regretted it.

As I worked through my grief (and he his), we went through a series of stages...one involving a radio request and dedication line...communicating back and forth through song. Something, I think, most girls can relate to.

When I read it, I was having a hard day; feeling misunderstood, alone, trying to sort out who I am now inside this world of being sick so much. I was also questioning my Fibromyalgia Diagnosis...something I had just been told I had from the Cardiologist.

As I read through the writer's symptoms..insomnia, brain fog, painful limbs, and crying uncontrollably...it shook me to core. "This sounds like me," I thought. "Is it possible she has Lyme Disease and doesn't know it?" (After all, most Lyme patients don't recall being bitten by a tick or get the tell-tale bulls-eye rash).

Tentatively, I posted a comment on her blog. I didn't want to lecture (after all, she's been struggling for nine years so who I am to say), but I did want her to be aware: Fibromyalgia is often misdiagnosed for Lyme Disease and vice-versa. They share the same symptoms, have the same waxing and waning cycle, cause the same misery. What if there are a whole slew of Fibro people out there who aren't seeing the right doctors or getting the right tests done? The possibility just makes me sad nuts.

To help, I've put together a quick list of how my LLMD (Lyme Literate Medical Doctor) determined I have Lyme disease. It is by no means comprehensive, but for anyone questioning their diagnosis or looking for a cause for it, it's a good place to start.

My Lyme/Fibromyalgia Journey...Before being diagnosed with Chronic Lyme Disease, I was told I have Fibromyalgia. I also technically had two negative Lyme Disease tests. A lot of people don't realize (especially non Lyme Literate medical doctors) Lyme tests come up negative for a lot of reasons, but this doesn't mean you DON'T have Lyme Disease (this is why Lyme is a clinical diagnosis). A couple of reasons this happens...

1) Lyme tests measure ANTIBODIES...not the actual disease and often the sickest folks don't make antibodies until starting treatment.2) Sometimes Antibodies cling to viruses...so there are not enough free floating Antibodies available for detection.3) The lab being used for testing is not sensitive enough or looking at enough strands of the disease to be accurate.

Luckily, by the time I got tested, I was seeing a Lyme Literate Medical Doctor...so he knew what markers point to Lyme...rather than just relying on a CDC positive lab finding (which can be elusive). Based on that, below are the things I would recommend to any Fibromyalgia patient to rule out Lyme or Tick related Co-infections as the root of their problem.

1) Find a LYME LITERATE physician...regular doctors don't understand this disease or know how to treat it. Note: Run from anybody who tells you Lyme is "easy to treat and difficult to catch." Other phrases that should send chills up your spine: "Lyme doesn't exist in _____ (insert your state here)." "If you don't remember getting bit by a tick or don't have a rash, you can't have Lyme Disease." "Lyme is easily fixed with a month of Doxycycline or __________." (That only applies when detected early and is only applicable if you don't have co-infections...which is very rare).

NOTE: You need a Lyme expert here...one who is currently treating and helping Lyme patients...not one who only knows about Lyme from med school (To find out why this is SO important, watch the movie Under Our Skin for more details).

2) Have them check your C4a levels and CD 57 levels...both are done by blood draw and are helpful indicators that Lyme might be present. (NOTE: C4a is usually done by Quest. If done by LabCorp, it must use the following code and have directions as noted C4a - LabCorp Code# 857334 Order Directly from National Jewish Medical & Research Center (NJMRC), Denver, CO).

4) If you've tested negative for Lyme through a regular lab (Labcorp, Quest), retest through IGENEX (the best Lyme Lab in the country) for Lyme Disease. Also, test for tick-related co-infections:· BABESIA· EHRLICHIA· BARTONELLA· RICKETTSIA

FYI: The co-infection test is finally the way they detected my disease. I had all of the factors....all of the symptoms...was positive for many of the markers (disrupted c4a and CD 57, high viral loads, positive on a couple of Lyme strands). When my Ehrlichia co-infection test showed up positive, they knew they had it (thank God I was with a Lyme doctor...my regular doctor would have stopped looking after the first round).

Anyway, this is all of the stuff I wish I would have known months ago. If I did, I'm sure I wouldn't be half as sick as I am now.

06/09/2011

I read the BEST blog post today. Not best, like Pulitzer Prize winning. Best like...rearrange your molecules...make you think...consider life from different angle (always my favorite kind of thing).

I especially enjoyed it for two reasons:1) It was written by my friend/super health cheerleader...aka brave new blogger, Saima.2) It made me ask myself a powerful question: What comes easy to me? Something I haven't considered in nearly a year..none the less spent any energy focusing on.

Lately, thinking about what's hard for me is easy. It's easy to worry about my future. Easy to focus on the negative. Easy to get swept up in despair, jealousy, pain, and bitterness. Easy to feel really, really awful for extended periods of time.

But, there are other things, too. Things that get less attention. And, if I take a minute (really breathe them in), it's easy to remember.

For example...1) Losing myself in a great piece of music (I can surf YouTube for hours)2) Making people feel loved and appreciated3) Finding/encouraging potential4) Public speaking5) Sales6) Loving animals/strangers7) Talking 8) Making up poems and songs9) Researching 10) Napping11) Listening12) Seeing both sides of the story13) Writing14) Standing up for what I believe in15) Being excited/enthusiastic/inspired/inspiring (about possums, causes, good service, kindness, office supplies, you name it)

These things, I'm really good at. It's actually nice to think about them....you know, focus on what makes me special, rather than what makes me feel rotten. Thanks, Saima!

06/03/2011

Man...have you ever had pan seared turkey breast? Nothing fancy. A little olive oil. Sea Salt. White Pepper. And Mmmwaaahhhh! I swear I am going to be featured on Top Chef one of these seasons. I don't know why I haven't cooked it before. It certainly fits the dietary restrictions...protein, protein, veg, protein. I guess when I think of turkey, I think of Thanksgiving, broilers, and Butterballs (nice to know you can teach an old dog new tricks).

I can already feel the Tryptophangoing to work (you're getting sleepy...very, very sleepy).

Now...for a quick nap before a couple of friends show up (God love them. They are coming to help with yard work and insurance paperwork).

To create your own inspired recipes, check out one of my favorite Lyme-friendly, cooking sites Affairs of Living. There's a lot of good stuff on there. I've been eyeing this pumpkin pie recipe for months. Don't know why I love pumpkin so much. For some reason, it just makes me smile.

**When you RSVP, please specify if you will be attending in person or virtually. If you will be attending virtually and you blog, please link to this post on your site and host your own party on the 25th (then send me the link on that day so I can link back to you).

Ehrlichia, caused by Ehrlichia chaffeensis, is transmitted to humans through the bite of an infected tick. IF detected early, Enrlichia is easily treated with Doxycycline. Left undetected, in an older person or someone with a weakened immune system, it can be deadly.The CDC reports case-fatality rates of Ehrlichia as high as 5%.

Difficult to diagnose because of its non-specific symptoms--high fever, muscle aches, chills, headaches--Ehrlichia often goes undetected. In the chronic stage--it can cause confusion, hemorrhages, and renal failure. It can also be accompanied by other tick-borne co-infections such as Bartonella, Babesia, and other things... which can come out of hiding with treatment. Ironically, one of the most concise and well-written articles I found to explain Ehrlichia was written for dogs -- not for people.

In Lyme world, Ehrlichia is considered a co-infection of Lyme (Borrelia Burgdorferi) -- a dinner companion of sorts. Other guests at my Lymeparty include Epstein Barr, Parvo, M. Pnemoniae, HHV 6, and Cytomegalovirus -- all of which are known to prolong and complicate treatment.

My Prognosis?

Recovery from Chronic Lyme Disease is debatable. Infectious Disease Doctors say Lyme is easy to detect and easy to treat; they also say "Chronic Lyme" does not exist (two points I would definitely argue). Lyme Literate Physicians (and those most entrenched in the battle) say Chronic Lyme is incurable; long term antibiotics are necessary to beat it into submission.

At this point, 12-18 months is my minimum estimated treatment time (and that's a conservative number). Many of my favorite friends have been fighting Lyme for years. I am hoping planning to avoid that fate and become one of the lucky ones. Time will tell.

Altered Today: First of many intravenous antibiotic/nutritional treatments, new protocol, diagnosis, and new problem...how to live and finance $500/week in medical expenses.

Note:To better understand Lyme Disease, the political controversy surrounding it, how it progresses, why your insurance company probably won't cover it, and how it can affect you, I highly recommend watching Under Our Skin -- a very enlightening documentary. You can watch it now on Netflix or view it instantly on YouTube for $2.99.

05/02/2011

Today was an interesting day at the doctor's office. I didn't leave with good news (or bad for that matter), but I did leave with a new freedom that I could say what I needed --good, bad, or indifferent-- and be listened to.

It was an exceptionally long appointment ...over an hour. I LOVE my ND (and his trusty sidekick). I know they have a lot of wonderful patients, but it tickles me to pretend I'm their favorite...even if it's only in my mind.

In between further testing, treatment options, new symptoms, and tears, somehow we managed to work in a conversation about Bin Laden, Netflix, and the actual nature of viruses. "They're really not alive..." trusty sidekick said.

It was good to laugh for a minute.

The end result?-An adjustment to my Doxycycline dosage (working up to 400mg/day...currently at 200)-New blood work for another IGENEX test (this one for co-infections)-A referral to a Neurologist and a Cardiologist (ugh)-A prescription for pain medication(s) (something I've been resisting, but can't avoid any longer)-And a couple of other things I'm not quite ready to talk about yet

Three weeks 'til my next appointment.

Altered Today: Peace of mind, confidence I am on or near the right track.

04/20/2011

Before I was sick, one of my favorite things to do was lead introductions to the Landmark Forum. If you haven't heard ofLandmark Education,they're a training and development organization. They say, they empower people to get what they want in life. I say, they are a true lifesaver.

Every good thing I created after the age of 32--my relationship with my family, my marriage, my company, my community projects--came from what I learned in that three-day seminar. Eight years later, even in sickness, Landmark is the best part of me. On my worst days, it reminds me to stay focused on what's actually happening (I feel pain, I am tired) rather than the story I make up about it (I'll never get better, I am dying). On my best days, it inspires me to focus on what's possible.

Last night was a perfect example of an action I took that I never would have taken as a result of my participation. Feeling frustrated about my current "undiagnosed" Lyme status, I decided to write an email to one of the world's leading Lyme Doctors (from the book Insights Into Lyme Disease Treatment: 13 Lyme-Literate Health Care Practitioners Share Their Healing Strategies) asking for his advice on what to do next with my medical treatment; do further testing, do IV antibiotics, pursue co-infections, go natural, treat parasites, treat viruses, etc.

In the past, I would have killed this idea before ever taking any action. Thoughts like "He's not going to answer...I can't do that without paying him...He's not going to care....He's too important to bother" would have stopped me. Instead, I was able to focus on what was actually true about this situation: I am asking for advice. He will help or he won't.

Carefully, I compiled my lab results, symptoms, prescriptions, and emailed them to him for analysis. The result? A response within 24 hours and a new treatment option I hadn't considered before--completely herb based--developed in part for people like me (people who want/need an integrative approach to healing).

In his opinion, if Lyme or other tick borne illnesses are causing my symptoms, this will address it. If my problems are virus and/or parasite related, this could also help. He was also kind enough to send me a referral to another doctor that could work with me if I choose to go this route.

In fairness, I don't know what I am going to do yet. Will I consult with a doctor in Texas? Will I go natural? Time will tell (although I can say, I am leaning in this direction). In the meantime, it was great to be reminded....I am powerful, I have a say in how this goes, I have options.

04/03/2011

The more I learn about Lyme Disease, the more I realize: good health is a journey not a destination. While it seems getting rid of this thing--whatever "this thing" is that is terrorizing me--is the goal. Healing my immune system and bringing my body back into balance is the thing that's sorely missing.

Which leads me to wonder (Lyme or Autoimmune disorder aside) what would cause the body to reactivate latent viruses, lower immunity, and at the same time aggressively fight itself? Does it stand to reason that horrible, nasty stuff can't live in a healthy environment?

After watching an important documentary called Food Matters, I have more question that answers. We all have cancer cells in our bodies, yet we don't all have cancer. And some people have Lyme in their system for years without suffering from symptoms. Is changing what we eat really the answer to eliminating disease completely? What actually causes illness--the invasion of poison or the disrupted immune system incapable of defeating it?

As I continue along my health journey, I'm excited about what I am learning about Vitamin C Protocols,Nutrition,Colloidal Silver, and more. While I wish I could have gotten the message differently, I now know; this illness is not a punishment, but rather an opportunity to take control of my health, my life, and my future.

04/02/2011

I completely missed that yesterday was April Fool's Day. As I flipped through channels, I thought something was weird; props falling over on the Price is Right, stuff blowing up on the Ellen set. Still, I never put it together; today is joke day--the day people are fooling each other.

That's one of the strange parts of being sick; subtleties are lost on me. Time is no longer measured by minutes or months. Everything lives in milestones; when pills run out, insurance claims are due, test results come in, or when we need more spinach.

Days now divide into systematic sections: the morning routine--which consists of swishing, eating breakfast, taking pills and potions, and sorting mail; the afternoon routine--which consists of dry brushing, sauna and/or bath, lunch, taking pills and potions, and researching; the evening run--which consists of dinner, more elixirs, reading, and tv; and the late evening run--which I spend with Angel, sometimes watching a show, reading, sipping hot milk, and always taking more pills.

In between (depending on how I feel), I blog, nap (or struggle to nap), deal with medical issues, go outside, read, and visit on line support groups (are you bored yet??).

Except for the sauna, I rarely go out alone these days--something I miss now that I think about it. I also watch WAY too much tv: The Talk, The Nate Show, Survivor, American Idol, Celebrity Apprentice, Top Chef (I almost tweeted Holly Robinson Peete yesterday to ask if she knows about the link between Lyme and Autism. If you see her, can you please pass that along?).

ALTER EVERYTHING What do you get when you combine a creative, Type A personality with Chronic Lyme Disease? A choice: A) Be swallowed whole or B) Reinvent yourself--daily.
Alter Everything is my quest to respect "A" and embrace "B" as much as possible. Here, I recount my daily adventures in pursuit of an altered life. –Kathy Tagudin